July 22nd-24th 2017
Bruising. Nose bleed. Petechia.
No, no. Please no.
I check his temp, 99.4, no fever.
We call Dr. Kutny. He reassures us it could be other things, but we need to get blood work. On the way we run through in our minds the endless possibilities of what they could tell us always coming back to CANCER. We brace ourselves for the possibility of hearing that hideous word again, but this time with our 6 month old BABY.
We check in at the ER desk and the nurse asks what's wrong. We can't help but just cry. I want to reply with, "EVERYTHING", instead we start explaining his symptoms followed by "his sister died from leukemia". Her face changes. Now it makes sense why we're here. Why that's more than just a bruise, more than just a nosebleed, more than just red dots on his collar bone. She knows what we are thinking and now we know what she's thinking too.
After triage, we make our way to the ER room where there are more nurses with the same question. Same response through our tear filled eyes and broken voices. Why must they make me tell them over and over again? We know the blood work will give us the answer.
They start an iv and by now the petechia has spread to his chin and back, bruising has increased as well. His platelets are low. No doubt. I remember thinking and praying over and over, "oh God, please don't be cancer". The blood spills over his tiny little arm onto the bed as she pokes him. His platelets must be really low. How could this be? I gave him a bath last night and saw nothing, absolutely nothing. No petechia, no bruises, nothing. It scares me how fast this has all changed. How quickly his platelets have dropped.
The ER doctor comes in with the preliminary results platelets are 4, white count neutrophils are 8. Wow, platelets are really low. But we are reassured with the normal white cell count. No leukemia blasts or anything else in the blood sample to be concerned with. That's a good sign for us and we both take a deep breath. We are instantly filled with relief even though doubt tries to creep in and steal our small victory. The doctor explains the possibility of ITP, Ideopathic Thrombocytopenic Purpura, basically a autoimmune response that attacks platelets. This was one of Dr. Kutny's possibilities as well and that gives us hope.
So where do we go from here, platelet transfusion? No, hes too little and that wont work. The answer is IVIG, intravenous immunoglobulin. Why does this sound familiar? Tiny was given IVIG when her platelet transfusions weren't "sticking". It supercharges the platelets so they won't be destroyed. The doctor explains the infusion, how we need to be admitted, and given our family history our destination once admitted....8 QB.
Chris and I just look at each other. Whose in charge? What other nurses are there? Whose the attending? Which room? Please don't give us 816.
After phone calls were made, we are able to take some deep breaths and thank God. transport takes us up the back elevators, asking, "have ya'll been here before?" We just look at each other and simultaneously say, "yes", as or hearts sink. The doors open and it all comes flooding over me, like it was the first time, the last time. We both try to fight back tears but just can't. How are we back here?We make our way to 802 and are happy to know that, Izzy, our sweet friend and one of Eleanor's favorites is our nurse. So strange to see these familiar faces again. HERE. With ANOTHER one of our babies.
Premeds begin late Saturday night, Tylenol and Benadryl, all too familiar. He takes them well and gently falls asleep as the IVIG infusion begins. They start slowly and increase ever so often making sure his little body doesn't go into anaphylatic shock. I can't sleep, instead I sit by his little crib and pray, watch him breathe, and listen to the pump, yet another familiar sound. Our sweet nurse Renae, spends most of her night in our room although she has 2 other patients. It makes me feel better that she's here keeping an extra eye on him. She reassures me it is going well. He finishes about 1 am and I finally lay down to sleep asking Renae to wake us at 4 when she gets labs.
Lab results are back and it's good news. Platelets went up to 13 and all other labs are within normal range. We are relieved yet again and hope they will send us home by the end of the day.
Around 9 am, Dr. Aye and others come into the room for family centered round. We are expecting to hear how well he did and how we are going home soon. Instead, there is concern. Dr. Xavier is concerned that something else could be going on in the bone marrow and due to his very young age, wants to do a bone marrow aspirate. Chris asks, "Why", trying to get further information.
"TO RULE OUT LEUKEMIA".
Chris and I hold our breath and just stare at each other before we both burst into tears. Dr. Aye comforts us and explains that Dr. Xavier wants this done solely due to his age and not our family history. She explains that it is her protocol with very young patients.
BONE MARROW ASPIRATE. LEUKEMIA.
No formula past 2 am and only clear fluids until 6 am. Surprisingly, he does well with this waking at 1 to eat a 6 oz. bottle and waking again at 5:45 to take 6 oz. of Pedialyte. He wakes only 10 minutes before they come to get us. Leah walks in the door, takes one look at us, and walks back out. She didn't know it would be our familiar faces waiting on her there. We know. We didn't think it would be us again either. We can't help but cry as we carry our sweet boy down the same walkways to the same room we've been so many times before. We were both losing it as we entered the room. Everyone quietly preparing their stations, looking down as if they didn't know what to say. Known of us could look each other in the face. The same people doing the same things bu t with HIM, without HER. So much of this doesn't make sense. They tell us how hell go out quickly once he gets the "magic milk" ans we sign the necessary approvals. his sweet little eyes roll back in his head as he gently falls asleep. Leaving is always torture. We wait in a small waiting area and just cry, begging God to not let it be cancer. Please Lord Jesus don't let it be cancer.
Rhonda comes to get us, telling us he did fine, is waking, and that the sample pulled easily which is always a good sign. We get to go back to him, find him still a little out of it and hold him. It's over, we'll wait on results and head back to the room. Waiting is always so hard. It's an emotional roller coaster as our minds literally play out ALL of the possibilities from the almost impossible to the probable and everywhere in between. Dr. Xavier and her team return with news- NO LEUKEMIA-THE BONE MARROW LOOKED PERFECT! Praise God.
Within an hour we were packing to go home.
